National Academies Press: OpenBook

Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata (2010)

Chapter: Appendix B Participants in the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys

« Previous: Appendix A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys
Suggested Citation:"Appendix B Participants in the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
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Appendix B
Participants in the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys

NOVEMBER 17–18, 2008


John Abowd, Cornell University

Paul S. Appelbaum, Columbia University

Timothy J. Beebe, Mayo College of Medicine

Partha Bhattacharyya, National Institute on Aging

Stephen J. Blumberg, Centers for Disease Control and Prevention

Laura Branden, Westat

Michelle Brotzman, Westat

Somnath Chatterji, World Health Organization

George M. Church, Harvard Medical School

Ellen Wright Clayton, Vanderbilt University

George T. Duncan, Carnegie Mellon University

Henry T. Greely, Stanford University

Myron P. Gutmann, University of Michigan

John Haaga, National Institute on Aging

Elizabeth Hamilton, National Institute on Aging

Jennifer Harris, Norwegian Institute of Public Health, Oslo, and Consultant to the National Institute on Aging

Kathie Mullan Harris, University of North Carolina

Robert M. Hauser, University of Wisconsin

John Milburn Jessup, National Cancer Institute

Clifford Johnson, Centers for Disease Control and Prevention

Murat Kantarcioglu, University of Texas

Alan F. Karr, National Institute of Statistical Sciences

Suggested Citation:"Appendix B Participants in the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×

Jonathan King, National Institute on Aging

Bartha M. Knoppers, University of Montreal

Barbara A. Koenig, Mayo College of Medicine

Laura Levit, Institute of Medicine

Stacy Tessler Lindau, University of Chicago

Jennifer H. Madans, Centers for Disease Control and Prevention

Karen J. Maschke, Hastings Center

James W. McNally, University of Michigan

Geraldine M. McQuillan, Centers for Disease Control and Prevention

Sharyl Nass, Institute of Medicine

Lis Nielsen, National Institute on Aging

Randall J. Olsen, Ohio State University

Georgeanne Patmios, National Institute on Aging

John Phillips, National Institute on Aging

Jerome P. Reiter, Duke University

Jeanne Rosenthal, Westat

Jane Schulman, Westat

Leslie Shaw, University of Pennsylvania

Kathi Shea, SeraCare, Inc.

Sherry Sherman, National Institute on Aging

Janet M. Eisenhauer Smith, University of Wisconsin, Madison

Mary Fran Sowers, University of Michigan

Erica Spotts, National Institute on Aging

Barbara Stanley, Columbia University

Richard Suzman, National Institute on Aging

Holly Taylor, Johns Hopkins University

Melissa Thomas, Mathematica Policy Research, Inc.

Arti Varanasi, Westat

Ulyana Vjugina, American Society of Hematology

Robert B. Wallace, University of Iowa

Maxine Weinstein, Georgetown University

Alan Westin, Columbia University (emeritus)

Louise Wideroff, National Cancer Institute

Gooloo Wunderlich, Division of Behavioral and Social Sciences and Education

Suggested Citation:"Appendix B Participants in the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
Page 97
Suggested Citation:"Appendix B Participants in the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
Page 98
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Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light.

In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis--all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing.

Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.

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